[DanL]

TYTD, I really appreciate the response and thoughts. my platelets have been between 21k and 29k for most of the last 2 years. I had a brief stint at 90k while taking prednisone, undergoing treatment with rituxan and taking azathioprine, but came down with PCP which caused me to drop it all at once, especially in light of the change in diagnosis from ITP to MDS.

What concerned me is the sudden drop in HGB from 13.5, which has been very steady down to 12.3, which while not substantial in terms of anemia, appears to be a change worthy of noting.

As for the bleeding, I seem to clot well when i am cut, but when i bruise, it is fairly ugly. if i hit myself relatively hard, it spreads to about 4 inches. I do have some amicar to help out if i get too concerned, but have not had to use it.

I have had consultations with three different groups including the city of hope and two of them said to wait until further progression, the other was in favor of immediate treatment. I decided to hold off in the absence of symptoms. I was concerned about the promacta trial because of the ITP trial information that showed several patients developing marrow fibrosis after being on promacta for a period of time - it was reversible in most cases though. I have not really considered the vidaza plus promacta. It definitely sounds like an interesting choice if they are willing to accept patients with moderate to severe fibrosis like i have.

Birgitta, as always i appreciate your insight. I have noticed that you seem to do well on thalidomide - have you had any bone marrow biopsies to determine whether you still have fibrosis or not? Has the severity lessened?